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Letter from Chairman Ken Mastris

Dear friends and colleagues

I hope you and your families are all keeping well and safe. We have all gone through a difficult time in 2020 and the start of this year is showing little improvement. Last year I lost my mother, who was 100, but as the circle of life goes gained a granddaughter in November but not able to see her, we must continue to keep safe.

As a National Federation, Tackle only exists by virtue of our support groups across the country, representing some 9,000 members. Supporting people living with Prostate Cancer, raising awareness and campaigning on issues is where our focus remains as coronavirus disrupts every aspect of our lives and our community comes together remotely. In that spirit, we begin this year together apart.

I hope the vaccine will bring us to some normality so we can meet and assist our groups and families who are living with and beyond Prostate Cancer. I know that many of you have gone through hard times and my thoughts are with you all.

Last year Tackle welcomed two new Trustees, Jackie Manthorpe a nurse and Humanistic-Integrative Counsellor who has first-hand experience of being both a cancer carer and relative of someone with cancer and Roshani Perera who co-founded the healthcare consultancy, Wicked Minds  which offers strategic advice and bespoke tailored solutions to  a range of customers across  in health and social care.

From March, we will be sending out, a monthly communication email to group leads and committee members. The purpose of this briefing will be  to give information that help committee members support their members and to ask for feedback, case studies and ideas from them to campaign ensuring your voice and that of your members is front and centre of all our communications .

We have Siobhan Connor doing our PR who some of you have met at previous AGM’s. Siobhan will be taking over Prostate Matters so please do share your news, photos and stories as she wants to hear from you.

Sarah Gray our National Support and Development Manager has now been in post for four months. During her first few months, she has been learning about Tackle, has met with many of you and our partner organisations and stakeholders over Zoom and visited several groups. This learning has given her a good understanding of what you value about Tackle and how we can best improve the support given to groups so you can grow your membership. If you haven’t yet spoken with Sarah, then please get in touch with her.

We are determined to emerge from this challenge with a stronger and better federation and look forward to demonstrating this to you. I hope that you and your family remain safe and well in these difficult times.

Best regards

Ken Mastris

Chairman

 

 

State of the Art – Has the time come to introduce early detection of prostate cancer?

NICE and SMC approve Darolutamide to revolutionise the treatment of progressing prostate cancer

The National Institute for Clinical Excellence (NICE) and the Scottish medicines Commission (SMC) have both now approved the use of a new drug, Darolutamide, as an option for treating hormone-relapsed prostate cancer in adults at high risk of developing metastatic disease. This stage of the disease is variably described as:

  • Non-metastatic castrate resistant prostate cancer
  • Non-metastatic hormone resistant prostate cancer
  • Non-metastatic hormone relapsed prostate cancer
  • Biochemical recurrence of prostate cancer

Such terms can be confusing for patients.  However, the journey that many patients can relate to is:

  1. Localised disease treated with surgery or radiotherapy (or a combination of both)
  2. A subsequent rise in PSA treated successfully with hormone therapy (Androgen Deprivation Therapy - ADT)
  3. A further subsequent rise in PSA as ADT fails to work.

High-risk patients are defined by NICE as having a PSA level of 2ng/ml or more and a doubling time of less than 10 months.  It is frequently found in patients who have few physical symptoms and where, by definition, conventional scanning shows no detectable metastases. These patients will inevitably progress to the metastatic phase - often quite rapidly - when significant symptoms of bone pain or even pathological fractures will require strong analgesics and quality of life will be significantly diminished.  In this metastatic phase, both Abiraterone and Enzalutamide can be prescribed.  Neither are approved for use in the non-metastatic phase.  Chemotherapy with docetaxel could also be offered as an alternative if it is appropriate.

None of these men expect miracle cures at this non-metastatic stage of their disease, but they now have the chance of an increase in both quality and quantity of life. For them and for their families it is a major step-change in the possibilities for treatment.

Darolutamide is the first (and currently only) drug to be approved for use at this stage of prostate cancer.  The drug can not only slow the progression of their cancer but potentially also increase length of life.

For patients and for their families it is a major advance in the possibilities for treatment. By their approval of Darolutamide, NICE and SMC have acknowledged an area of great unmet need.  This joint decision enables all appropriate men within the UK to have access to this new treatment. 

Further information from Steve Allen, Tackle Patient Representative:  steve.allen@tackleprostate.org

 

Tackle demands protection for people with prostate cancer after millions have been abandoned

Tackle has joined forces with other leading cancer charities eg Cancer Research UK and Macmillan Cancer Support to write to the Prime Minister and the other heads of regional parliaments to demand protection for men with prostate cancer to ensure that diagnosis, treatment and clinical trials will not continue to be delayed by COVID-19. The full text of the letter is as follows:

"Each of your governments has committed to improving cancer survival and ensuring that everyone can still receive cancer diagnosis, treatment and care throughout the COVID-19 crisis. As we enter a second wave of the pandemic, we need you to stand by these commitments. Now is the time to back the NHS and invest in cancer care, not only to get services get back on their feet but to transform cancer care in the UK into the world leading services we all want to see.

COVID-19 has made the challenge ahead tougher. Millions were left waiting for screening and thousands went without a referral for tests. Over 30,000 fewer people started their treatment and most cancer clinical trials were paused. NHS staff have worked tirelessly to give the best care possible, and the situation is improving, but they need more support.

We must learn lessons from earlier in the year. As COVID-19 cases rise again it’s imperative that there are no further delays to essential cancer diagnosis, treatment and clinical trials. In the coming months:

  1. The public must feel confident that if they have suspected cancer symptoms, they will receive a diagnosis swiftly and safely.
  2. Health systems need to have ‘COVID-protected’ safe spaces so that cancer patients can be cared for with minimal risk of exposure to COVID-19.
  3. There must be frequent and rapid COVID-19 testing for all NHS staff in primary and secondary care.
  4. We need measures in place to maximise service capacity, including use of the independent sector where needed.

But this alone will not be enough. Cancer services need your help to address deep seated challenges. Workforce and kit shortages – particularly in diagnostics – were holding back cancer services long before the pandemic. We simply need more staff, and for them to be fully equipped.

The UK Government’s spending review is ­­­an opportunity to put your weight behind your commitments, and give the NHS what it needs to provide the best cancer care - and for the devolved governments to do the same.

People affected by cancer have already suffered terribly as a result of this pandemic. We’re asking you to act now to uphold your ambition to improve cancer survival across our four nations".

NICE approve Darolutamide to revolutionise the treatment of progressing prostate cancer

The National Institute for Clinical Excellence (NICE) has just approved the use of a new drug, Darolutamide, as an option for treating hormone-relapsed prostate cancer in adults at high risk of developing metastatic disease. This stage of the disease is variably described as:

  • Non-metastatic castrate resistant prostate cancer
  • Non-metastatic hormone resistant prostate cancer
  • Non-metastatic hormone relapsed prostate cancer
  • Biochemical recurrence of prostate cancer

Such terms can be confusing for patients.  However, the journey that many patients can relate to is:

  1. Localised disease treated with surgery or radiotherapy (or a combination of both)
  2. A subsequent rise in PSA treated successfully with hormone therapy (Androgen Deprivation Therapy - ADT)
  3. A further subsequent rise in PSA as ADT fails to work.

High risk patients are defined by NICE as having a PSA level of 2ng/ml or more and a doubling time of less than 10 months.  It is frequently found in patients who have few physical symptoms and where, by definition, conventional scanning shows no detectable metastases. These patients will inevitably progress to the metastatic phase - often quite rapidly - when significant symptoms of bone pain or even pathological fractures will require strong analgesics and quality of life will be significantly diminished.  In this metastatic phase, both Abiraterone and Enzalutamide can be prescribed.  Neither are approved for use in the non-metastatic phase.  Chemotherapy with docetaxel could also be offered as an alternative if it is appropriate.

None of these men expect miracle cures at this non-metastatic stage of their disease, but they now have the chance of an increase in both quality and quantity of life. For them and for their families it is a major step-change in the possibilities for treatment.

Darolutamide is the first (and currently only) drug to be approved for use at this stage of prostate cancer.  The drug can not only slow the progression of their cancer but potentially also increase length of life.

For patients and for their families it is a major advance in the possibilities for treatment. By their approval of Darolutamide, NICE have acknowledged an area of great unmet need.

This decision does not apply to Scotland, but the Scottish Medicines Consortium are already in the process of appraising Darolutamide for similar usage.

Further information from Steve Allen, Tackle Patient Representative:  steveallen@tackleprostate.org

Tackle Prostate Cancer Appoints Sarah Gray as National Support & Development Manager

Tackle Prostate Cancer charity, the voice of prostate cancer patients and their families in the UK is delighted to announce the appointment of Sarah Gray as its new National Support and Development Manager.

The charity has been awarded funding by the National Lottery for the project Tackling Prostate Cancer – peer-to-peer support for men with prostate cancer. Sarah will lead this 3-year project with an aim to develop and support groups across England and assist them to support their members and encourage new membership, alongside growing Tackle’s network of patient-led Prostate Cancer Support Groups by working with healthcare professionals to set up new support groups in identified areas and encourage referral for peer-to-peer support.

Working across health and social care for the majority of her career, Sarah Gray brings with her a wealth of experience of working collaboratively with stakeholders and patients to bring about effective change and service improvements for the care and support of people living with a variety of life limiting and long term conditions.  Sarah has previously worked in regional roles across the West and East Midlands for Macmillan Cancer Support, Parkinson’s UK and British Lung Foundation. With British Lung Foundation, Sarah was part of a project funded through the Health Foundation which looked at alternative models of peer support for people living with COPD. More recently, Sarah has been working with Prostate Cancer UK on scaling up and rolling out nationally an evidenced based model of supported self-management.  Sarah’s own father is living with advanced prostate cancer, so she understands the impact and consequences that treatments can often have on a man’s life.

Sarah is delighted to be working for Tackle Prostate Cancer on this 3 year funded project and said:  “I have listened to many stories from men on how valuable peer support is, and how important it is for them to have a space to learn from others in a similar situation to themselves. I am looking forward to learning from the amazing work done by the current peer support groups, and working together with them, as well as other charity partners and healthcare professionals to ensure that more men are able to tap into local support from people who understand what it is like to live with and beyond prostate cancer.”

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members. Many groups contributed to an online survey last year. The answers to which provided much of the background for the lottery application and helped towards its success.

When the lockdown period began, it was clear that Tackle’s network of face-to-face support groups would need to be put on hold. Sarah has already had success moving groups into a virtual format so Tackle can reach people in their own homes.

Sarah Gray said: “At the end of my first week, I was invited to sit in on a Zoom meeting for the Reading group. Around 35 men and some wives were online. It was a great meeting, with an inspiring clinician who gave an informative talk on Brachytherapy, lots of time to ask questions, share experiences and also time for club news including a forthcoming walk . Everyone was welcoming, relaxed and friendly. What was also interesting was that not everyone was from Reading, which got me thinking about some of the opportunities for Zoom meetings and how it can break down geographic barriers.”

 Ken Mastris Chairman of Tackle Prostate Cancer said: “On behalf of the Trustees, I am delighted to welcome Sarah Gray to Tackle. This is a great opportunity to help more men and their families feel less isolated, better supported and more empowered to navigate their cancer journey.”

Prostate cancer is now a bigger killer than breast cancer, making prostate cancer the third biggest cancer killer in the UK. Every penny raised will make a difference, lives will be saved and more people will be aware of the need to be tested.

Along with the lottery funding Tackle will also be continuing to meet its objectives of campaigning on behalf of patients and raising awareness in the community. It will also enable the ‘Save a Dad’ initiative to be followed through in secondary schools where the aim is to get a discussion on prostate cancer in the National Curriculum, just as breast cancer is included today. Working through secondary schools Tackle would like to make teenagers aware that prostate cancer will impact 1 in 8 of their dads. The charity hopes that by educating the next generation about the importance of men being tested earlier it can help “Save a Dad”.

Appeal application against NICE decision accepted

Steve Allen, Tackle Patient Representative, reports that the combined application for appeal against the NICE decision on Abiraterone made by Tackle and Prostate Cancer UK has been successful.

A submission made by Prof Nick James, a nominated clinical expert, has also been accepted.

This is merely a first step in a long process. It does in no way mean the original decision will be revoked but at least it is progress.

NICE rejects use of Abiraterone for men with newly-diagnosed metastatic prostate cancer

Tackle is extremely disappointed to report the latest decision by the National Institute for Health and Care Excellence (NICE) to reject the use of Abiraterone for men with newly-diagnosed metastatic prostate cancer in England and Wales.

Current first-line treatment for men with newly-diagnosed metastatic hormone sensitive prostate cancer (ndmhsPCa) is hormone therapy with additional chemotherapy (Docetaxel).  However there are many men who are unable to tolerate Docetaxel and, for them, there is a great unmet clinical need.  Abiraterone would have met that unmet need but this latest decision by NICE effectively prevents its use within the NHS.  For these men there is no choice: it is still hormone therapy only.

NICE do not deny that Abiraterone is at least as effective as Docetaxel when used in men with ndmhsPCa.  Their decision would appear to be have been made purely on the grounds of cost effectiveness and not on clinical effectiveness. 

This decision is directly in opposition to that made by the Scottish Medicines Commission earlier.  There is therefore now a disparity in availability of treatment depending on where in the UK the patient lives.

Tackle are already working in close collaboration with Prostate Cancer UK to lodge an appeal against this decision.  Read our Summary of the NICE decision and our Comments on it

if you are a patient who feels their treatment could be affected by this decision, then please do contact us via our patient representative:  steve.allen@tackleprostate.org 

Please note that this latest decision will not affect men who have already commenced therapy with Abiraterone instead of Docetaxel as a result of the Covid crisis.

STOP PRESS: We have started the Appeal Process - read more here.

Restarting Cancer Services in the NHS after COVID-19

COVID-19 is an unprecedented crisis which has had a profound impact on health and care services across the UK and will continue to have an impact for the months and years to come.

To guide the restoration of services, Tackle Prostate Cancer along with 24 other cancer charities have come together - as One Cancer Voice - to develop a ‘12-point plan’, supported by available data and intelligence, for what we believe the health service in England will need to do to enable cancer services to recover from the pandemic.

The plan sets out how we can deliver the cancer screening, tests and treatment that patients need.

Read the plan in detail here.

European Experts Back Prostate Cancer Screening

Tackle are at the forefront of the campaign for a targeted national screening programme for prostate cancer.

Prostate cancer  is now the most commonly diagnosed cancer in UK and the annual toll of deaths from prostate cancer continues to rise, now topping 12,000, with deaths exceeding those from breast cancer.

The European Association of Urology have now published a position paper in the journal European Urology which represents the conclusions of probably the most expert, unbiased body so far to report on Prostate Cancer Screening which comes out clearly in favour.

Read the full story here.

Tackle Trustee Roshani Perera turns the spotlight on mental health in cancer care

Tackle Trustee Roshani Perera, director of the Wicked Minds healthcare consultancy, has written an article that has been published in PharmaTimes. The article looks at the provision of psychological support services for men living with prostate cancer and their carers and families across England based on a Tackle Freedom of Information request.

Click here to read the article in full...

European Experts Advocate Population-based Screening

Tackle wholeheartedly welcomes the news that the European Association of Urology, probably the most informed and expert major international body to make a judgement, has published a clear and unequivocal recommendation in favour of population-based Prostate Specific Antigen (PSA) screening to reduce the unacceptable death rate from Prostate Cancer (PCa).

In a lengthy paper published in the journal European Urology (Eur Urol, 2019; 76: 142-150), the 12 member expert panel drawn from across Europe, including the UK, has assessed all the key evidence accrued over 30 years of PSA use for PCa screening.

In summary, the greatest benefit derives from early detection of aggressive PCa at a curable stage which comes from having a baseline PSA at age 45 to individualise a man’s future risk of developing PCa.  This should be linked to the other standard risk factors of ethnicity and a   family history of prostate cancer or breast cancer to determine the subsequent follow-up interval:  one yearly PSA for men at high risk, extending out to 8 yearly for men at lowest risk.

MRI scans and new biomarkers should be used to determine which men with a raised PSA require a prostate biopsy and, crucially, to avoid unnecessary biopsies. Men subsequently diagnosed with non-aggressive, localised PCa can be safely managed by active surveillance thus avoiding unnecessary overtreatment.

Having weighed up the pros and cons, the panel concluded that the weight of evidence now shows a clear balance in favour of screening and thus fully supports the introduction population-based  PCa screening programmes.

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